April 2014 Doctor Event- Q&A Breakfast for Doctors Featuring National PANS/PANDAS Expert Panel

Panelists include: Dr. Sue Swedo - originator of the PANS/PANDAS diagnosis. Dr. Madeleine Cunningham of Moleculara Labs, and namesake to the Cunningham Panel - a test that helps aid the diagnosis of PANDAS. Dr. Nancy O'hara, formerly of Defeat Autism Now, and a private practice pediatrician who presented the day before on the link between Lyme and PANS (or PITANDS). Dr. Mark Pasternack, Unit Chief for Pediatrics Infectious Disease at Massachusetts General Hospital, where there's been a recent uptick in diagnosis and treatment of PANS/PANDAS. And Dr. Beth Latimer, Georgetown, a leading doctor in the PANS/PANDAS field.
These experts give an explanation of PANS/PANDAS to a group of health care professionals and answer many questions about this ailment. Please note: questions from the audience were not related to specific patients, and there was no microphone present for those questions - so ever attempt was made to caption those questions on the screen.

[@orrrobert]

I think this video is excellent so I did a rough outline with timings. Please revise it and fix my mistakes and repost your corrections.
Sweedo
2:48 first reports in 1917
3:25 2010 neurologists claiming it didn't exist
5:15 controversy increased after meeting with neurologists
5:42 encephalitis
6:00 ocd or eating disorder plus 2 of 7 behavioural regression sleep problems, urinary symptoms, motor and sensory sensitivities, extreme separation anxiety,
8:20 Madeline Cunningham prof microbiology and immunology
sydenham chorea rheumatic fever how autoantibodies could affect the heart and the brain
11:20 markers of the disease
those PANDAS patients without choreiform movements don't have antibodies against D2 dopamine receptors
www.moleculara.com
14:02 animal model obsessive behaviours can be resolved and passive transfer of the antibodies also helps bring on the behaviours
14:40 Nancy OHara consultative integrative practitioner
This is a clinical diagnosis
In kids that meet the questionaire she does Cunningham panel does lots of labs. Are there other things that they may be deficient in?
Most are Vit D deficient many are zinc deficient
17:35 Mark Pasternack
pediatric infectious disease Dr Geller sent him kids
Does antibiotics
21:11 titres not helpful without timeline
22:30 perianal culture perianal strep hard to treat and cure cause they relapse
23:16 symptoms of perianal strep
24:00 micoplasma testing you need a confirmatory IGM test
false positives are very common.
25:05 only one lab that he knows does confirmatory testing Mayo in Andover
25:40 Beth Latimer
genetic predisposition 12-13 years of treating kids
26:40 pediatricians say your crazy there's no such thing as PANDAS
that's changing in Washington DC area
27:30 epidemic in DC and Richmond VA hard to get anyone to do anything about it
28:50 90% of diagnosis is from history
30:10 Handwriting disgraphia
30:55 schools in DC are informed
31:25 I'm suprised how often I see perianal strep vaginal
32:10 walk in clinic records
32:55 which antibiotics and how long
33:16 step ladder amoxicillan
betal actimase production in tonsils
amox only 50-60 percent effective
34:30 cephlosporin is where he starts cephlexin twice daily (50mg per kg per day)
36:00 augmentin next step augmentin ES formulation highish dose without diarea 50-60 mg/kg
37:15 Clindomyacin forth step he doesn't see cdif in young children can cause diarea by itself tastes really bad.
39:40 floroquinalones cyprofloxasin or levro he is nervous about it. He has put noone on prolonged
40:48 He looks at Rhuematic fever model kid will be treated till he is an adult on average 15 years of
41:51 will look at antibiotic holidays if the kid is doing great likely in the summer
42:20 injectable bicilin
43:11 Azithromyacin if alergic to pen not a great strep killer 10mg per kg then 5mg/kg per day after week
Works better on micoplasm PANS
45:50 probiotics
47:10 use them generously colony forming units is the important designation refrigerated is better
vsl #3 custom 150-450 billion colony forming units per package sprinkle them to get 25 billion
separate time as the antibiotics
she sees secondary yeast infection that the probiotic would help
49:25 if positive micoplasm titre a trial of Azithromyacin will show if it is or not
52:40 strep titres not indicative
53:00 what about IVIG
antibiotics then steroids perhaps for month then IVIG
54:55 how long will IVIG last? if it is strep PANDAS and you can adequately prophilact one IVIG is enough 2g/kg 1g on each of two days
56:15 last step on ladder plasmapheresis if immediate danger
57:20 very effective but need central line.
58:00 steroids have no benefit first week but 2nd week you see difference. Steroids don't make these kids crazy
58:45 steroid 2mg/kg not above 60mg bid no later than 3pm second dose drop in half second week drop to once a day third week every other day 4th week
59:22 IVIG you will have worse symptoms for the week after
1:00:00 she gives steroid and toridol (for headache) with IVIG
1:00:45 home infusion
1:01:11 plamapheresis single treatment caudate size was 20% bigger after treatment it was back to normal size
1:02:11 strep plus mono bad
1:03:00 kovosavich has treated people that have been sick for a decade and seen good results.
1:03:45 after IVIG follow up may include change course of antibiotics cognitive Behaviour therapy psychotropic meds full court press treat symptoms and cause
1:04:45 Latimer plasmapheresis 80 kids 4.5 full body exchanges in 4.5 days
when did you feel really better 4-5 months but better gradually up to that time tics take longest to go away.
1:06:30 time course of response
do spinal taps MRI T2 inflamation
prolonged EEG signs of encephalitis
1:07:30 sleep study
Rem behaviour disorder benzodiazpines
flare sequences sagital sequences important
1:09:40 this is how MS was not accepted 30 years ago
1:10:20 ENT tonsils if tonsils chronically infected take them out
if we are going to do IVIG or plasmapheresis we take them out
1:12:40 they do flare after tonsillectomy so we give steroids and warn the parents
1:14:10 small tonsils may not be great
1:16:00 tremendous push back from doctors and insurance companies the kid is improving we have a packet to give the pediatricians -Nancy
1:17:30 kids with CBT do better
1:18:50 when do we use psychotropic meds? should start as soon as the child can tolerate them perhaps start with 1/20 of a regular dose of SSRI
1:19:50 benzodiazapines ativan to get through lumbar puncture one out of 30 had a bad reaction
1:20:55 haldal helped in sydenhams with anxiety
1:21:28 role for benzos for sure short acting oral bursa
no distonic reaction they have lots of dopamine
rispornal mtabs very helpful works within a minute you can give a little guys .5 mg dose and he'll still be looking at you cause there dopamine levels are sky high.
1:22:52 we would like to bank the strep strains but most diagnoses are not cultured they are rapid strep tests
1:23:40 if you have a positive overnight strep culture from a PANDAS patient NIH wants it.
1:24:50 swimming pool no literature link
1:26:10 children should be getting more benzodiazapines but there is a concern about dependance
1:29:00
differential expression of strep
urinary frequency culture then treat may protect them from a generalized response
after a number of exposures to group A strep the antibodies may generalize to the point where they respond to other immune triggers
1:31:20 choreaform movement demonstration
normal up till age 6
they can be hypotonic (floppy)
1:32:55 if subclinical Nancy has a checklist if they meet the criteria they will treat them 3 weeks of antibiotics
if they have urinary only Sweedo would treat. if 2 or three of the criteria other than urinary Sweedo would treat even if no ocd Latimer
1:35:00 Yale Brown obsessive compulsive checklist
bad thoughts asking for reassurance
1:36:40 Tics come on in an explosive fashion unlike tourettes
1:38:40 vaccines don't do it if acutely ill but otherwise we are all for vaccines
1:40:00 End of September flare after Thanksgiving flare between Thanksgiving and Christmas she thinks it's from sleeping with there cousins
1:41:00 MS is the same and also in April
1:42:20 not the only thing that happened the day you got the vaccine you went to the pediatricians office you went to mcdonalds and played in the balls
1:43:00 dopamine you get more sensitivity and more dopamine
1:45:17 never put one of these kids on an amphetamine during a flare
1:47:30 15% have hallucinations delusions

[@newenglandpanspandasassoci5082]

Hi Robert, thank you for your comment. This outline is fantastic. We appreciate the time you took to create this.

[@nudratbutt5393]

Hi i live in norway, and i feal that no doctors understand us. My son has astma and gets often streptococcus. 1 year ago he got strep infeksjon and had high fever. He got pencillin for 1 week and the strep was gone but after just few days 4-5 days he was sick with same symptoms and got new pencillin. Then he was fine but later some weeks i noticed he had some few eye tics going on. I tryed to find out what it could be and hope u can maybe help me? He is having strep infeksjon again now and more eye tics going on. He has fever and is fealing week.
Hope u can help me. The doctors here us not educated enough about tics and pandas?